A special education legal resource discussing case law, news, practical advocacy advice, and developments in state and federal laws, statutes and regulations. Postings include insight and sometimes humor from Charles P. Fox, a Chicago, Illinois attorney who is also a parent of child with special needs, and other guest authors. Email: [email protected]

October 18, 2017

Milestones; what are they? We hear about them from the moment our children are diagnosed, for some, born. For most of us, they're not even mile"stones"; they're pebbles, fragments, grains of sand, achievements so small, so tiny, so minuscule that only we notice them. And we keep them to ourselves, afraid some "professional" "paraprofessional," "pseudoprofessional," or interfering busybody might discount them into oblivion.

I myself,have given credence to too many naysayers, too often, for too much. I've wallowed in the aftermath of the dream-stealers, driven to sitting in the corner with a can of Reddi Whip, jar of fudge, half-gallon of low-fat ice cream, a serving spoon, and no bowl, recalling the compilation of shortfalls, failures, and stagnations, silently crumbling. I have been robbed of the "bragging rights" so richly enjoyed by parents of the Gymboree, beauty pageant, geniuses, only to be replaced by a pity party award, from a contest I refuse to enter.

Raising a child with a disability can be fraught with seemingly endless periods of hopelessness. You bargain away abilities, offering them up to the Universe, in exchange for some other certainty, only to realize there is no certainty in disability -- except for one: individuals with disabilities don't fit the mold. And because they don't, school staff, career counselors and even parents, oftentimes give up all hope of pointing them toward a happy, successful and fulfilling life. More importantly however, it is because individuals with disabilities are individuals, they should be seen, treated, and encouraged as such. Paths should fit the individual, and measures of success should be uniquely calibrated.

This weekend, I hit a milestone of my own;I experienced what it was like to be proud of my son. Pure pride! Not the kind of pride mixed with an apology, nor the kind of pride you need to over-explain, or over-justify, for an outsider to even try to pretend to validate, but the kind of pride with which I'd never expected my family and I would be blessed. It is because of this experience, and in hopes of inspiring other parents, especially those at the beginning of their journey, or wallowing at the local Dairy Queen, that I wanted to share my steadfast belief that we need to pound their outdated mainstream, traditional, milestones into rubble, and create non-conventional pillars of achievement of our own.

My son, now 25 years old, along with other highly-talented, edge-pushing, opinion-changing artists with disabilities, received recognition forhis art in an exhibit at the Ukrainian Institute of Modern Art. The exhibit, entitled A is for Artist, is not a "cotton balls and glue" "good job, Buddy," kind of art show. It is a legitimate display of artistic talent that validates just one of the alternate paths to success that individuals with disabilities are not often told they can take.

Twenty-five years ago, I would never have envisioned that my son would one day have a career, as an artist or otherwise. I feared there was no valued place in society to which he could aspire. And certainly, no persons other than those in his immediate family who would celebrate his contribution to any community. Yet, to my glorious delight, a young woman at the exhibit opening, said the most beautiful, eye-opening, reality-changing words I'd ever heard: "I'm a fan of your son's work." If that's not a reason to change anyone's belief-system toward people with disabilities, I don't know what is.

I have to thank The Arts of Life, a studio for artists with disabilities, for breaking all the rules; for seeing artists as artists, and measuring success as success. And especially for demonstrating that all people are different, but the right to hopes and dreams is universal.

I admit, I am not always a cup half-full kind of person; nor a half-empty either. In all honesty, most of the time, my cup's bone-dry. However, today my hope runneth over. So I wish the best for you and your family. And wherever you are on your journey, please lick your wounds and your spoon, and when you're ready, put one foot, or crutch, or wheel, in front of the other, trusting there will be a fork in the road that takes your child on his or her path -- and hopefully that path will be handicap accessible.

April 08, 2016

Our recent series of articles on the employment rates and work challenges experienced by persons with disabilities paid only a glancing look at perhaps one of the most viable employment options for persons with disabilities—that of self-employment. According to the US Census Bureau, people with disabilities are almost twice as likely to be self-employed as persons without disabilities (14.7% compared to 8%). Although the challenges of creating and sustaining a small business may seem daunting to most of us, self-employment actually can make sound sense for many workers with disabilities. It really needs to be part of the discussion in the "transistion process" albeit typically it is not.

October 15, 2014

The internet is a wondrous strange place for the parents of a child with special needs. With the click of a mouse, parents can research information, locate specialists, learn about medical treatment and educational options, and perhaps most importantly of all, end their isolation. All at once, parents can locate a community of other parents struggling with the same issues with which they are grappling. Whether a child’s needs are severe or mild, parents may find much more effective and sanity-saving support from virtual strangers than they can from well-meaning pediatricians, grandparents, or friends.

October 13, 2014

I have reproduced this moving and inspiring story with permission. I loved this story and hope you find it as meaningful as I did.

When I decided to join the cross country team as a junior, I was already bracing for the worst. I had endured countless tales of brutal training, injuries, and endless races in the mud, reducing even the toughest legs to Jell-O. In spite of this,I quickly realized that the true essence of the sport has nothing to do with a footrace. It does, however, have a great deal to do with David.

November 29, 2012

The following is the heartfelt wisdom and pathos from my own daughter. She is a beautiful, wonderful person who has had to face the challenges of being a sibling to a brother with special needs and the internal identity struggles of being adopted from China. We are all a work in progress, but her essay below captures in poignant terms her thoughts about her "difference."

Well, if you had to ask, a difference that I have had to overcome was my family. Being adopted kind of bothered me, and my brother has spastic cerebral palsy and epilepsy. I know being unique and different is good, but this to me was VERY unusual. I mean how many people do you know have a family of an adopted daughter from China, and a son with a disability? Just as I thought, I may be the first. As you continue to read you may find yourself asking question about your own family. Just know your family is something you should appreciate and enhance.

October 31, 2012

In doing research on finding appropriate placements for
students with either high-functioning autism or Asperger’s syndrome, I got side
tracked by a little jewel of an article that had appeared in a magazine
published by the National Education Association. Titled “Square Pegs: Kids with Asperger Syndrome are Hoping You’ll
Help Them Find a Place in the Classroom that Fits Just Fine,” the article
quotes Lucas, a young man with Asperger’s who had just graduated high
school. According to Lucas, “You’ve heard
people say we don’t want to be square pegs in round holes, we want to be square
pegs in square holes. To me that means
we don’t need to be fixed. We’re not
broken people. We just need to be
understood.” What Lucas is asking for—understanding--is what is essential to
ensure a successful placement for the child with high-functioning autism or
Asperger’s.

Teachers who are willing to go the proverbial extra mile may
discover that children on the spectrum can contribute enormously to their
classrooms. These children can shine
brightly with a teacher who appreciates who they are and shows classmates by
example how to treat the child with autism or Asperger’s with respect. Children who are placed with rigid, top-down
disciplinarians are probably not going to do so well. Everyone—the child, the teacher, the
principal, and the family—are going to be miserable. And some children simply cannot have their
needs met in a mainstream classroom.

January 20, 2012

Although there have been recent complaints that both actors and characters with disabilities are underrepresented on television, two excellent documentaries about disabilities have aired in the past year. Journey into Dyslexia, which appeared on HBO in May of 2011, profiles students and adults who have dyslexia. According to the HBO web page, many of the adult professionals who struggled to learn in school now consider their dyslexia a gift and a defining reason for their successes. Critics called the straightforward interviews with the persons with dyslexia, including children, the most powerful part of the documentary, which was made by Academy-award winning filmmakers Alan and Susan Raymond. Among those interviewed are a professor at Johns Hopkins University, inventors, entrepreneurs, and consumer advocate Erin Brockovich. Additionally, the HBO website accompanying this documentary is rich with information on dyslexia. Another documentary from the Sundance film festival on dyslexia is called The D Word.

December 16, 2011

Some years back, The Onion, a satirical publication, announced in a headline, “Miracle of Birth Occurs for 83 Billionth Time.” At our older son’s Bar Mitzvah, my husband used this article to explain that we perhaps take for granted the milestones our children reach. We forget that each and every birth, and each and every event in that child’s life, is unique and special. Each bris, each first communion, each first tooth, each first day of kindergarten are all miraculous. We’ve somehow lost our wonder in the ordinariness of life. And yet, how much greater is the miracle when it is a child who has been ill, or who has a disability, or whom for whatever reason there was doubt that he or she would reach a particular milestone?

September 01, 2011

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be. The competition among the students (and their parents!) is breathtaking. My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student. But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003 . Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges. According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help. “Coordinated services” provide at least one trained staffer and additional supports such as study skills classes, tutors, and other services. “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers who work with the students.

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc. What we did rely on, however, was the disability information published on college web sites. We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person. And we met with each and every disability office at schools our son was considering. In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested. One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him.

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it. But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools. Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own. I will tell you that our older son was just such a student. But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability. (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.) Although our high school transition coordinator recommends always disclosing, we were on a fence. But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity. I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability. If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway. Consequently, my son wrote about his diagnosis in his Common Application essay, and I’m happy to report that the schools didn’t blink.

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive. The days of “helicopter parenting” must end. (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.) My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room. This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

My husband and I are now home. Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had never occurred to me to worry about—who knew?). He’s excited and nervous about his new adventure. We are scared, hopeful, and proud. And missing him, too.

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland” (http://www.our-kids.org/archives/Holland.html). Like everything else involved in raising a child with a disability, parents can find themselves in Holland, even while searching for a college. As for my husband and me, we’re planning to go to Italy this spring—for real, this time.

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be. The competition among the students (and their parents!) is breathtaking. My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student. But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003. Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges. According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help. “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services. “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc. What we did rely on, however, was the disability information published on college web sites. We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person. And we met with each and every disability office at schools our son was considering. In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested. One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him.

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it. But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools. Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own. I will tell you that our older son was just such a student. But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability. (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.) Although our high school transition coordinator recommends always disclosing, we were on a fence. But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity. I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability. If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway. Consequently, my son wrote about his diagnosis in his Common Application essay.

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive. The days of “helicopter parenting” must end. (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.) My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room. This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

My husband and I are now home. Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?). He’s excited and nervous about his new adventure. We are scared, hopeful, and proud. And missing him, too.

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.” Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college. As for my husband and me, we’re planning to go to Italy this spring—really.

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be. The competition among the students (and their parents!) is breathtaking. My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student. But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003. Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges. According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help. “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services. “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc. What we did rely on, however, was the disability information published on college web sites. We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person. And we met with each and every disability office at schools our son was considering. In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested. One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him.

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it. But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools. Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own. I will tell you that our older son was just such a student. But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability. (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.) Although our high school transition coordinator recommends always disclosing, we were on a fence. But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity. I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability. If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway. Consequently, my son wrote about his diagnosis in his Common Application essay.

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive. The days of “helicopter parenting” must end. (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.) My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room. This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

My husband and I are now home. Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?). He’s excited and nervous about his new adventure. We are scared, hopeful, and proud. And missing him, too.

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.” Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college. As for my husband and me, we’re planning to go to Italy this spring—really.

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be. The competition among the students (and their parents!) is breathtaking. My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student. But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003 (http://www.boston.com/news/education/higher/articles/2006/03/30/determination_paves_difficult_path_to_college/). Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges. According to the Wall Street Journal (http://online.wsj.com/article/SB122160388151245179.html), at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help. “Coordinated services” provide at least one trained staffer and additional supports such as study skills classes, tutors, and other services. “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers who work with the students.

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc. What we did rely on, however, was the disability information published on college web sites. We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person. And we met with each and every disability office at schools our son was considering. In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested. One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him.

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it. But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools (http://www.amazon.com/Colleges-Students-Disabilities-Attention-Princeton/dp/0375762205). Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own. I will tell you that our older son was just such a student. But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability. (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.) Although our high school transition coordinator recommends always disclosing, we were on a fence. But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity. I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability. If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway. Consequently, my son wrote about his diagnosis in his Common Application essay, and I’m happy to report that the schools didn’t blink.

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive. The days of “helicopter parenting” must end. (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.) My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room. This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

My husband and I are now home. Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had never occurred to me to worry about—who knew?). He’s excited and nervous about his new adventure. We are scared, hopeful, and proud. And missing him, too.

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland” (http://www.our-kids.org/archives/Holland.html). Like everything else involved in raising a child with a disability, parents can find themselves in Holland, even while searching for a college. As for my husband and me, we’re planning to go to Italy this spring—for real, this time.

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be. The competition among the students (and their parents!) is breathtaking. My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student. But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003. Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges. According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help. “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services. “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc. What we did rely on, however, was the disability information published on college web sites. We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person. And we met with each and every disability office at schools our son was considering. In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested. One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him.

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it. But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools. Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own. I will tell you that our older son was just such a student. But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability. (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.) Although our high school transition coordinator recommends always disclosing, we were on a fence. But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity. I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability. If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway. Consequently, my son wrote about his diagnosis in his Common Application essay.

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive. The days of “helicopter parenting” must end. (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.) My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room. This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

My husband and I are now home. Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?). He’s excited and nervous about his new adventure. We are scared, hopeful, and proud. And missing him, too.

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.” Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college. As for my husband and me, we’re planning to go to Italy this spring—really.

Anyone who has helped a teenager through the college selection process knows what an extraordinary stressful time it can be. The competition among the students (and their parents!) is breathtaking. My husband and I found it extremely difficult with our oldest son, who is a strong, “traditional” student. But to navigate the college selection process with a special needs student is a whole different ball game with an entirely different bucket list of worries and “to-do’s.”

I know that we are blessed that we were even able to consider college for our now 18-year-old son, because only about a third of students with disabilities attend college according to the US Department of Education in 2003. Whereas public high schools are required by law to provide individualized educations for students with special needs, colleges are required to make only “reasonable accommodations” for qualified students. What this means varies wildly from school to school, and there is a lack of terminology to describe support programs offered by colleges. According to the Wall Street Journal, at a minimum, schools will offer “basic programs,” which offer only the accommodations required by law; eg, un-timed testing or note-taking help. “Coordinated services” provide at least one trained staffer and offer additional services such as study skills classes, tutors, and other services. “Structured” or “proactive” programs charge additional fees, often involve contracts, and trained staffers work with the students.

In general, we found the various glossy brochures mailed out by schools fairly useless—all the students were happy, the sun always shone, etc, etc, etc. What we did rely on, however, was the disability information published on college web sites. We found that schools that had pretty skimpy information about disability support on the web site offered fairly skimpy services when we met with their disability offices in person. And we met with each and every disability office at schools our son was considering. In doing so, we were able to scratch off the list fairly quickly (though painfully) some small private schools in which our son was interested. One office felt that they could have a staff person meet with our son every other week (wholly inadequate for a student with significant organizational deficits); at another school the disability coordinator appeared to be unfamiliar with our son’s diagnosis and unaware of what it meant for him.

Like every other parent/student, we purchased the different college guides that describe the various advantages and disadvantages of different schools—which schools students rated the most highly, which had the most accessible faculty, which had the best food, which had the worst dorms, best parties, you get it. But we also purchased the K & W Guide to College for Students with Learning Disabilities, which rated different disability programs at different schools. Given the distance and our son’s needs, we were utterly unwilling to consider a school on the East coast that our son was interested in and is now ultimately attending until we saw that it had a particularly high rating from the K & W College Guide.

I’m sure you’ve heard tales of those mythical students who are disciplined and can get through the application process relatively on their own. I will tell you that our older son was just such a student. But our youngest . . . oh well . . . Actually, the hardest part of the application process was deciding whether or not our son should disclose his disability. (Students are not required to do so; colleges are of course not allowed to discriminate against students who do identify their special needs.) Although our high school transition coordinator recommends always disclosing, we were on a fence. But during one particularly interminable college recruiting program (again, our students are always happy, the sun is always shining, etc), I reacted to the admission rep’s statements about respecting and seeking diversity. I figured we would call them on it. I suggested, and my husband and son agreed, to disclose the disability. If a school were going to be bothered by the disability, it wasn’t a school our son should be attending anyway. Consequently, my son wrote about his diagnosis in his Common Application essay.

Last week my husband and I drove to the East coast to drop our son off at school. My older son’s university had offered a program to the parents during freshman orientation on “Letting Go.” Parents were told that they needed to trust that they have raised their children well, that they are prepared for college, and that they will thrive. The days of “helicopter parenting” must end. (I told my husband that I would walk out of any similar session if offered at our younger son’s school--fortunately, it wasn’t.) My final act of loving “helicoptering” (if that can be a noun) was to unpack and organize my son’s dorm room. This week a co-worker, who had also just dropped off her freshman son, laughed about moms who organized their freshman’s shirts by color. Guilty as charged. And yes, my husband set up the wireless for the laptop.

My husband and I are now home. Our son is out East without us, and it’s up to him now to make things work. He has survived his first earthquake and his first hurricane (two events it had not occurred to me to worry about—who knew?). He’s excited and nervous about his new adventure. We are scared, hopeful, and proud. And missing him, too.

Parents of children with special needs either love or hate Emily Perl Kingsley’s poem, “Welcome to Holland.” Like everything else involved in raising a child with a disability, parents find themselves in Holland, even while searching for college. As for my husband and me, we’re planning to go to Italy this spring—really.

June 29, 2011

The following is a blog from Marilyn Green-Rebnord, who has been a court appointed special advocate or CASA. In this role she has provided invaluable help to families trying to navigate the special education system. She was also one of the founders and moving forces behind Special Kids, Special Families that for more than a decade provided excellent advice, support and presentations on various topics to help families. While Special Kids has now disbanded she continues to help families as a CASA and working part-time in my office.